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tagger

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Connie,

I missed you posting the list, since that was the week I was out of town. I don't mind you reposting it. :) I hadn't gotten around to it. I also found a lot of things to add to it, from the book Dangerous Grains by James Braly and Ron Hoggan. They list over 200 symptoms and related diseases to gluten intolerance in the back of the book. Very comprehensive.

Judy,

I am hesitant to eat Wendy's chili, since last year someone on the old board mentioned that they meat they use in the chili is leftover burgers that sat around all day, then they toss em in the chili for the next day. Doesn't sound appetizing to me. There isn't supposed to be gluten in there, but what are the chances that a few of those burgers were put on buns and then taken off the bun and tossed in the chili? Oh well. It's so hard to eat out. I got contaminated at Outback Steakhouse, but have had very good luck at Mimi's Cafe.

God bless,

Mariann B)


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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Hi Sarah,

How about: Chatting on the big white telephone or trying on the white porcelain football helmet? I remember those from my university days. Recovery back then was taken for granted. At one friend's house, in the morning, lined up on the kitchen counter, would be 2 aspirins and a glass of orange juice for each guest! Aah, things were so simple then!

The list justies my instinct that my mother also suffers from celiac disease. Among other things the symptom that stands out is sjorgens syndrome from which she now suffers.

Tagger

PS I haven't heard from anyone who has trouble taking Vit B (the jitters, irritability etc) No takers? Also has no one experienced irritability and/or mood swings after ingesteing gluten?

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PS To Shar 4,

I have gained 30 lbs in only one year! It's terrifying! None of my clothes fit. I feel very uncomfortable most of the time. I don't know whether it's the gluten-free diet, menopause, or some meds I'm taking. (not to mention Sciatica. It's hard to even walk the dog when you are in so much pain).

I was never a really skinny person, just average and on the short side so the weight gain is really staring to worry me. I don't think I look really different, but I find it so uncomfortable. Soon I will pull myself together and start swimming again, which is my preferred exercise.

Tagger

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Tagger, I was reading somewhere around here that some B vitamins are made from yeast. Are you sensitive to yeast? That might be it, but who knows. I don't take very many vitamin supplements since before I went gluten-free they made me feel awful, but since going gluten-free I haven't bothered to find a good gluten-free supplement. I don't like to take supplements unless I feel like I need them.

Also irritability and mood swings are very common symptoms when accidently getting some gluten. So common, in fact, that most people don't mention it, it just is sort of assumed. :rolleyes:

I'm sorry to heat your family is just not paying attention to the fact that they most likely have celiac disease, but I am dealing with the same thing with my sister. Two of her three children are obvious celiacs, and so is she. But the negative tests seem to be enough for her to dismiss it, since she really does not want to be burdened by the gluten-free lifestyle. Well, I do what I have to do, and she knows all about the disease. It is up to her now. The same for your family, at some point you have to let go and let them decide. If they choose not to pursue a healthy lifestyle, then so be it. :( There is not much else we can do, except be there for them when they need us.

God bless,

Mariann


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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Tagger,

Those euphemisms are pretty funny, too! I do get irritable when I have accidentally ingested gluten, but not from taking B vitamins. I did just read somewhere on the internet that B vitamins appear to cause acne outbreaks in some people, especially on the chin and forehead. Well, I recently started taking a (gluten-free) multi-vitamin and promptly broke out all over my chin and forehead, so I stopped taking the vitamin and my skin immediately took a giant step for the better! In a few days I will try taking some unfortified nutritional yeast, which is high in B vitamins, to test my hypothesis that it is only *synthetic* B vitamins that cause acne. I'll let you know my experience if you're interested. Were the vitamins you took synthetic? If so, maybe a food-based (though not yeast-based if you are sensitive to yeast) B supplement would work better for you. I don't know; I'm just fishing here. I hope you're doing well!


Sarah

gluten-free since November 1, 2003

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Hi Mariann and Sarah,

The last Vit B I tried specified gluten-free, but I'm pretty sure it was synthetic. The allergy to yeast theory might be correct as I was told years ago that I was allergic to mould. On the other hand back in my twenties (a non gluten-free time) I used a product called "Kefir's Brewer's Yeast". It was in powder form and stirred it into my orange juice every moring. At that time it made me feel great! Who know's though what changes have happened in my body since then. At any rate I can't find it anymore.

Thanks for the responses. I would be interested to know the outcome of your "Vit B experiment". Over the last few years I've never been able to stay on it long enough for it to affect my skin. (by the third day I was climbing the walls!)

Thanks for the responses.

Tagger

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Hi Everyone,I,m new to this process.I,m an RN with a 20yr hx of fibromyalgia.I wonder if the fibro has been brought on by my recent diagnosis of celiac disease.I,m tired and sad today. I do all things right,exercise,stretch,eat right, take supplements and still wake up with bowel cramps,sweating,aching,and fatigue.It gets tiring try to figure out what I can eat.Are many people with this condition also sensitive to dairy?I try to stick to yogurt and rice milk.Has anyone tried or know of a good web site for an elimination diet.Blessings

Godskid

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Hello!

YES! I have noticed symptoms other than the usual digestive symptoms!!! My reactions are mostly neurological in nature. I was misdiagnosed as bipolar, was completely psychotic and hospitalized five times! Then there are the ADD like symptoms, problems with focus, short term memory, dyslexia, along with fatigue, depression, paranoia, anxiety... there are probably others that I've forgotten. Also, I took a tap dance class and was so humiliated with my inability to "get it" that I almost cried. It was (I believe), a case of mild ataxia and slowed visual processing along with short term memory problems. Having a right-left problem didn't help!!!! I am fine now and haven't had to take psychotropics for a long time. Right now I do have to take some ADD medication, because I do not have the money to buy the supplements that have helped me in the past and I can't go for the expensive food allergy testing, malabsorption testing and nutrient deficiency testing... I believe that I still have a need for higher than normal amounts of some nutrients but all that investigative work will have to wait until I can make more money.

My mother has been diagnosed with Alzheimer's disease, however I believe that she has either celiac disease or non-celiac gluten intolerance like me. She's had the same symptoms as me but never got quite as extreme on the mental illness scale.

Alas! My sisters don't even want to talk to me about all of the research that I've done on the neurological symptoms of gluten intolerance. I sent them my test results, (the elevated igG and my gene test result: I have the HLA-DQ1 gene) and copies of medical papers from the likes of Marios Hadjivassiliou and Alessio Fasano and even one about a woman that RECOVERED from Alzheimer's disease...

It seems that all that I can do is take care of myself and pray that my mom stays happy and comfortable as she declines perhaps unnecessarily.

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Hi stemanndemon -

I was at one point diagnosed (incorrectly) as bipolar with psychotic episodes, and hospitalized once for being suicidal. In high school I had been in the play, "One Flew Over the Cuckoos Nest" - I played Nurse Ratched, and I kept thinking when I was in this hospital, wow, Nurse Ratched in a hospital... weird....

I, too, have that HLA-DQ1 gene and have had worsening trouble over the years with tripping over things. I also have chronic sciatica (been having problems with my back in that area for 10+ years now) and have days where I get so frustrated walking around my house because something will be on the floor. Yet other days I can go dance and be totally fine - what gives?

My grandmother had Alzheimers - I am now wondering about that. Neurologically I am very similar to my dad - we both have sciatica, both have had our share of depressions and mood swings, both have trouble thinking at times. My mom's side of the family has a lot of stomach problems. I have two problem genes so I'm wondering if the DQ1 is from my dad and the DQ3 is from my mom. I know my uncle on my mom's side has the same problem I have/had when I ate whole grain wheat - I always found I got sicker eating whole grain wheat products than white flour for some reason.

And my most recent weird thing is bladder infection-like pain but no infection. I have been told it could be swelling that is transmitted from my gut or uterus, or that it could be interstitial cystitis, which is an auto-immune thing. I am not sure if this is linked at all to gluten but am frankly quite annoyed that another unexplainable chronic thing has popped up, now that I've been trying to be so careful with my diet (though I did get really sick a couple of weeks ago from an accidental ingestion and my stomach has been off ever since...)

Anyway, madness, I tells ya!

Stephanie


Diagnosed by food challenge, 10/04

Gluten-free since 10/04

Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)

Interstitial Cystitis, 7/07

Fibromyalgia, 6/11

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I went on a gluten-free diet two months ago to support my son whose blood test came back negative but whose doctor said to put him on a gluten-free lifestyle anyway because his symptoms are so classic, he can't think of what else it could be. Anyway, within two weeks of going gluten-free myself I noticed some major changes in my own functioning: My bowel movements normalized (I alternated between constitpation and loose, greasy, floating stools), my skin started clearing up (just a generalized rashiness on my inner thighs and face), the achy pains in my joints went away, I had ENERGY, and my cloudy thinking started clearing up. Two years ago, when all these symptoms appeared for me, I had Lyme disease from a tick bite. I'm also in my mid 40s so I thought I was just getting old. Now I'm wondering if the Lyme Disease (which for me included a very high fever) didn't trigger a gluten intolerance in me.

What I noticed last week, to keep with the topic of this thread, is that I accidently ate something with gluten in it (just didn't read the label right, for some reason). Within two hours I had a raging headache and the next day had the runs, bloating and burning when I urinated. It all cleared up in two or three days... but I sure don't want to do that again. The headache was debilitating!

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Lyme disease would be enough to trigger the symptoms of gluten intolerance. Having the fog lift in my brain was such a wonderful feeling. Getting nailed with gluten is unavoidable at times.


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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This is absolutely amazing! I was diagnosed with celiac (blood test) just the other day. I think I must have had it for a long time though - I'm 32 and have osteoporosis, plus my dental enamel didn't form correctly when I was a little girl. Plus - I've had a lifetime of depression. I first took anti-depressants when I was 15 years old. I tried to kill myself when I was 16. I've taken anti-depressants on and off for years (with one 3 1/2 year stint on wellbutrin and effexor). It is *so* nice to find that all of this depression might go away once I'm on a gluten free diet.

About the B vitamins - yes! I become absolutely irritable after I take them. I actually managed a health food store for about 1 1/2 years and came across a few other people who can't take them. So, you are absolutely not alone in that. What *does* work to help calm me down is 5-HTP (200-300 mg/day) and Glutamine.

I absolutely think that everyone with celiac should start taking glutamine once on a gluten-free diet because it helps the intestine to heal. PLEASE take it to help your body heal faster!! Get it in the powder form and take a scoop in the morning and at night. Probably the cheapest place I've found it is at webvitamins.com - use Jarrow brand because it is pharmaceutical grade and very pure. (I just sent them email asking if it is gluten free - but I'm almost positive it is - I will post again when I find out for sure.)

Also - my dad has been bipolar for years - as is his sister. I *really* want him to be tested. How do you get someone you think might have celiac disease to get tested?? My mom keeps saying, "Just because you have this doesn't mean everyone else does.." which infuriates me. :angry: He has more health problems than anyone I know. This could be a simple explanation.

Geez I talk a lot! :blink:

I love this message board and you guys are all very inspiring and wonderful :D

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Some people just can't accept that a food that billions of people eat every day can cause so much damage. This may be the case with your mother. i would talk directly with your father. since he is the one with health problems he might be more open minded.


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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My symptoms are boring these days compared to what I've read here....some diarrhea maybe, maybe constipation, and lots of gas. I do have a tendency to feel tired at times and I do have occasional insomnia, but I'm not sure I can thank my celiac for that--v there are other credible possibilites.

Ed

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